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The last couple of months have been heart wrenching. My dad died. He was 83 years young, and until the end, he was very active. A couple of weeks before he went to the hospital, he drove from south Florida to northern Illinois in two days, covering the distance from south Georgia to home in one day to outrun a snow/ice storm. He had always been my biggest ‘cheerleader’ from the time he and mom got me at 10 days old until he died. But let me back up a bit.

My dad had always been pretty healthy. He had the standard appendectomy and gallbladder surgeries. He did have a bout with thyroid cancer a few years ago, that required surgery and radiation, but he was considered to be cancer free with the scans monitoring his situation. This is a guy who didn’t even own a bottle of Tylenol for a long time, and when he started having some unexplained back pain several months ago, he finally gave in and got some Aleve. When he called his primary doc about the back pain in November 2015, the doc ordered muscle relaxants over the phone- for a guy who had no history of chronic back pain, and did have a history of cancer. I wasn’t (and still am not) very happy about that. I feel he should have been seen in person. Just as a matter of good care for something that wasn’t part of dad’s history. Dad just sucked it up and dealt with it.

He felt good enough to go to Florida after Christmas with his female acquaintance, whose daughter and son-in-law have a condo overlooking the ocean. During his time there, he had what was felt to be food poisoning, and did a two night stint in the hospital down there, staying an extra night when he got too dizzy in the elevator when leaving the first time for them to actually let him go. He felt bad enough after that to want to get home as soon as possible, to see his own doctor who finally ordered an x-ray when he got back. X-rays really aren’t that great for back pain unless there is a fracture of some sort, or the discs are showing degenerative changes (which is the very basic place to start with diagnostic testing). The x-ray didn’t show much besides some normal aging changes. The doc also gave dad some pain meds, which did help a bit. But dad got worse.

On March 1 (a Tuesday), dad asked me to go to see his doctor with him (being the family RN, dad liked it when I could explain things to him after appointments in language that made more sense to someone not in the medical field). He was able to walk into the office and perform all of the tests with no difficulty aside from some pain with specific movements. The pain was mostly to the left of his spinal column in the chest portion of his spine (in the back). The doc ordered an MRI, which dad did NOT like, because of claustrophobia, but it was the best thing he could have ordered…. and would have been much more useful a few months earlier.

The next day, dad called me to say that he woke up with his legs feeling weird, like he couldn’t feel them very well, but it had eased over the course of the day. He chalked it up to the muscle relaxant he’d taken before bed the night before, and decided not to take any more of them. The next day, Thursday March 3, dad called me at 8:00 a.m. Anybody who knows me knows that I’m a night owl normally, and getting up around noon was my usual routine. Dad always respected that, so I knew that if he was calling, something was really wrong. He said he couldn’t walk right. He’d gotten to the bathroom, but needed me to get over there as soon as I could. I asked him if I had time for a shower, and he said yes. I had already figured that going to the ER was the only logical thing to do at that point, and was getting ready for a day at the hospital, minimum. When I got there, dad was sitting on the bed. He stood up, and it was like watching someone try to stand on an inner tube in a swimming pool. I told him to sit down, and just let me know what he needed to get ready to go to the ER via 911- it was going to be the safest way to transport him, as well as avoid the waiting room. After he shaved and had a bowl of cereal, we got a few things put into a bag in case they kept him (I couldn’t imagine them not keeping him since he lived alone, I’m disabled enough that caring for him would be not very logical no matter how much I wanted to, and he needed to know why this was all happening… he needed tests). Then EMS came for him, and I followed the ambulance to the hospital.

The usual ER things were done (IV, labs, x-rays), and then they ordered an MRI. Dad was not amused, and was very anxious about the whole thing. He’d gotten some pain meds, anxiety meds, and nausea meds, along with a washcloth over his eyes, and by the time he went to the MRI I don’t think he would have cared if they put him in a coal mine shaft. He said it wasn’t so bad. The results weren’t so good. They’d only done the lower spine in the ER, as they can only test for emergent problems- and there were some ‘suspicious’ lesions in his lower spine. It was enough to admit him. And enough to scare him.

His oncologist (he requested) has been a family friend for decades, as well as my mom’s and my oncologist at times (mom died in 2003 after 17 years cancer free). The good doc came up that evening, and suspected that dad had multiple myeloma based on the type of tumor he’d had in his thyroid gland a few years earlier, and the looks of the initial MRI. He also said that they needed to get an MRI of the rest of his spine, since the area where dad had the most pain was higher up. Dad has always been terrified of hearing ‘multiple myeloma’ since his mom died from that (with amyloidosis complicating things the most) in 1979. SO much has changed in treating MM since then, and “Bob” (oncologist- not real name) said that if it was MM, that dad could have a good quality of life with chemotherapy pills. But first, more testing with the MRI being the one dad was most nervous about.

It took a couple of days to get dad through the MRI, but when they got it, they saw a lesion pressing ON dad’s spinal cord at T-7, causing the pain, as well as inability to feel where his feet were when he was trying to walk. He could move his legs, and had good strength when pressing or pulling against the doc’s (or my) hands. The pain at this point was the worst, but only really bad if he had to move. I’d never seen him in so much pain, and in 20 years of working as an RN, I don’t know if I’d seen too many other people with that level of pain. Even my chronic pain (which is a different beast altogether) paled in comparison (and I don’t condone comparing pain, as everybody feels it differently in accordance with their own very personal frame of reference). But dad turned pale, and grimaced to the point of not recognizing him if I hadn’t been there when it happened. He was immediately scheduled to start radiation to shrink the mass within a couple of hours of the MRI being done and read. Biopsies were done of various areas in the spine and bone marrow, and the hope was still that dad was going to be able to go to the rehab hospital, and eventually return home. At least that was what we were aiming for, and “Bob” was optimistic at that point.

Dad was in the hospital for about three weeks before being sent to the rehab hospital (NOT a nursing home with physical and occupational therapy, which are fine for many things, but not intensive rehab). He was still very understandably terrified, but gave it his all once he knew that the rehab hospital would only work with him if he could do three hours of therapy a day (broken up into four sessions between PT and OT). He didn’t believe he’d be OK, but knew he had to work as if he believed if he wanted any chance at going home (with help if needed), and not a nursing home. So, he worked as hard as he could, and was transferred to Van Matre Rehab Hospital for the next stage in his excruciating journey.

Hydrocodone (Norco, Lortab, and Vicodin’s main ingredient) has been in the news a lot in the last few months. People are dying from overdoses. While that is very sad, it has created mayhem for those who take meds as directed. Those who follow the rules are being ‘punished’ because of the actions of those who don’t (yes, I believe addiction is a disease, but there is a point in the beginning where using chemicals is a choice; genetics is said to load the gun, circumstance pulls the trigger, and the addict *at first* has their finger on the trigger… addiction doesn’t happen at literal gunpoint).

Hydrocodone has been moved from a schedule III to a schedule II. That means that any refills must have a paper prescription- no getting phoned in refills. Those with chronic pain must now go to the MD office and get the piece of paper to take to the pharmacy, then wait for the prescription to be filled, and then go back home. That is ludicrous when someone hurts so much that leaving home for anything is painful. My spine is collapsing, my discs are degrading, my thighs are shrinking from neuropathy, and I’ve got fibromyalgia. I also have chronic headaches. I’m in a lot of pain, more days than not. I don’t remember ‘pain-free’. And now, I have to deal with the actions of people I have never met who have emotional issues that they use drugs I need to squelch. Those people are now dictating my medical care.

Less than %6 of those who are prescribed opiates who TAKE THEM AS PRESCRIBED ever become addicted (Google it). So, %94+ of those who need pain meds for chronic conditions are now subject to stricter rules because of those who use them for psychological reasons/pain. I’ve had a prescription for one form of narcotic or another for almost 20 years. I might take the meds for a few days and then take none for a couple of weeks. I might take one pill on those days, or I might take two or three across the 24-hour period. Depending on the type of pain I’m having, an extra gabapentin (seizure med also used in pain control) or even Excedrin will work better than the opiate. Depending on the headache type, a triptan works much better than an opiate. But on those days when narcotics are the only thing that will make it worth taking another breath so I can remind myself that it will ease up at some point, I shouldn’t have to pay for what an addict is doing.

Addicts are going to get their opiates (if that’s their drug of choice) no matter what. I see this change in ‘rules’ driving more people to use herion or other illegally obtained drugs, and anticipate notable jumps in heroin deaths and overdoses over the next few years. I already know of an entire medical group’s practice (for one entire hospital system here) that no longer allows primary care docs to prescribe pain meds because of this new change in the law (doctors already are monitored for how many prescriptions they write for narcotics, how many pills they give at a time, etc). So the doc who knows the patient the best isn’t allowed to determine what is best for him/her.

My primary care doc initially wasn’t comfortable in prescribing stronger opiates when regular Vicodin (hydrocodone 5mg w/ acetaminophen 500mg) wasn’t working (after the discontinuation of Darvocet, which was effective), so I went to see a board certified pain management doctor. Once I had a ‘system’ of what med to use when, she was then OK with prescribing, so I could have one doctor prescribing the vast majority of my prescriptions (my neurologist is the only other one), using one local pharmacy, and one mail-order pharmacy.

I have worked as a detox RN in a treatment center. I ‘get’ that drug addiction is a disease. I have a great deal of empathy for those who are in treatment and making positive changes in their lives. But their inability to handle meds should not determine my medical care. What someone else can’t control shouldn’t create issues for MY doctor when I am able to take meds as prescribed, and have for two decades (for chronic pain). Acetaminophen (Tylenol) is the leading cause of liver failure in this country…. why isn’t that scheduled (or withdrawn from the market)? Alcohol-related deaths can take out entire families at a time w/drunk driving- should we have licenses for buying booze? Why are those with legitimate, documented medical disorders that cause pain made to ‘pay’ for those who don’t use the meds as directed?

My primary care doc and pain management doc (who I only see sporadically at this point) know me better than the DEA does. My pharmacist can vouch for no hinky requests for refills. I’ve never shown up in an ER asking for pain meds. I don’t crave narcotics. I don’t take larger doses, or more frequent doses than are prescribed. I follow the rules. And now, especially with winter approaching, I will have to go pick up a piece of paper (getting in and out of the car is painful in the summer, let alone the cold) which, until October 6,2014, was done by phone between pharmacy and the doc’s office. I had to go every three months to be re-evaluated (which still stands), which isn’t a bad thing. I don’t think pain meds should be thrown around as if they are insignificant… but addiction isn’t my problem. Pain is. There is a huge difference. I don’t even let myself get to the point of physical tolerance (when someone takes something as prescribed, and the body becomes used to it being there… withdrawal symptoms can happen if the med is abruptly stopped- and that is not the same as addiction). There is a gross lack of awareness between addiction, dependence, abuse, and tolerance- and I think that applies to policy-makers as well.

No law is going to save people from themselves if they either don’t want to be saved, or don’t see that they have a problem. They might not ‘get it’ on the first run through rehab or 12-step meetings… but those who keep at recovery will eventually get there, and be clean.

For those who are now in a position of not having a physician who will prescribe pain meds (whether from fear, ignorance, or restrictions from his/her employer- you may not know why they have changed their policies), here are some tips from an RN of nearly 30 years, who has taken care of addicts, chronic pain patients, and lives with chronic pain:

1. See ONLY a board certified pain management doctor for pain control. They often have ‘rules’ such as random drug screens, no dosage change over the phone, limits as to how many months before actually making an in-person appointment (vs. picking up the prescription from the desk), etc. Do NOT see a doc who asks how you will pay, writes a prescription, and has a line around the block…. Do. Not. Go. There. 😮

2. Use only one pharmacy (two ONLY if you also get meds from a mail-order pharmacy for other chronic conditions). Let your doctors know which pharmacy you use, and offer to get copies of records if they want them. Pharmacies are bound by HIPAA (privacy laws), and might not be able to tell the doc asking what other docs have prescribed (if someone from the same practice is on call, they probably can, since they are acting on your regular doc’s behalf for you).

3. Don’t dramatize pain. Tell the doctor where the pain is, how bad it is, when it is better, when it is worse, what helps, and what makes it escalate. You may have pain for the rest of your life- don’t wear out the extreme descriptions when you have 30-65 or more years to describe it. Sometimes letting your doctor know what the pain keeps you from doing is helpful…. those pain scales are kind of useless for chronic pain. But, if you tell your doctor that when it’s moderate, you have to postpone laundry, or if it’s moderately severe, you have to cancel appointments, that can give better information for chronic pain. It’s way different than acute pain.

4. Agree to get tests done to more clearly identify what is causing pain. If you refuse to get diagnostic tests done, that can indicate that you know that nothing is going to show up. Not all disorders show up on tests, but working with your doctor when they want more information via testing will go a long way.

5. NEVER change doses or frequency without talking to the doctor who prescribed the pain meds (or any meds, for that matter), unless you have been given specific instructions. There are some pain meds that have a very narrow window between effective dose and the dose that will cause you to stop breathing.

6. Don’t ever forget the good parts of your life. You are not defined by your pain or any other medical conditions. You decide if you are happy or not.You decide if you focus on nothing else. I know that there are days (and sometimes weeks) when you really can’t focus on anything else for much of the time… but when you can, take advantage of those days and be thankful for your pets, family, friends, the ability to still work (I’d give just about anything to still be working as an RN), your interests, etc. Your attitude is completely in your control, even if nothing else seems to be. 😉 ❤

I got a canned e-mail from my dad’s medical provider, asking for one of those Press-Ganey surveys to be filled out. I don’t do those. They’re a colossal waste of time, and the results are used ‘against’ nurses in ways that are demeaning of the job. They’re a popularity contest for healthcare. Nurses aren’t concierge staff… they’re there primarily to give medical care. Not have to be subjected to some very fortunate person complaining about not getting coffee ‘sooner’, totally oblivious to the reason it was ‘late’ was that the nurse was doing CPR on someone two doors down. Anyway, it got me all stirred up, and I wrote the following before seeing that it was a ‘no-reply’ e-mail. Sneaky them :p

–I’m xxxxx’s DPOAH, and deal with all of his e-mail (I’m his daughter- and a disabled RN). He is pleased with his care w/Dr. Kxxx- no issues whatsoever. I go to some appointments with dad, and also have Dr. Kxxx as an oncologist- great folks in the office area, lab draw folks, and Dr. Kxxx himself. Couldn’t get much better.

As an RN (I still keep my license), I have a general loathing for Press-Ganey, since it doesn’t consider all factors in someone’s care (especially inpatient- like if someone complains about their coffee request being slow to be delivered, while the nurse is tending to someone who is either trying to die, or has coded somewhere down the hall). Totally bogus complaint in the GRAND SCHEME of things… our society is too much about “me”, and not about the entire picture.

IF there are issues, I have no problem contacting the hospital directly. It’s really none of Press-Ganey’s business in my opinion. If you can tell me why their butting in is so important, I’m teachable !

I do have some compliments regarding a couple of tests I had a week or two ago. I had a abdominal and pelvic CT w/contrast and a CXR. The nurse and techs in both departments were outstanding. Lisa and Shannon were in the CT department- both very personable, friendly, and gave great instructions. They had the perfect balance between respecting my knowledge as an RN since 1985, as well as informing me of what was going on (and what needed to happen since I’m on metformin- and getting a follow-up creatinine done 2 days later). Lynette was in x-ray, and came SO quickly to get me for the CXR- very professional as well, and also kind. They made the inconvenience of having to drag my ratty body away from home much less unpleasant. My overall experiences in the outpatient/testing departments have always been good- every last person has been pleasant and professional. I didn’t feel like they were trying to suck up, so that Press-Ganey would be happy… they were genuinely doing a nice job.

I have had my share of nightmares in the ER there…

I haven’t been to that ER in a several years- so this might be outdated (wanna be fair). My experiences there in the early to mid-2000s were horrific. I was considered a ‘frequent flyer’, though many times, someone else called 911 because I’d lost consciousness (I have dysautonomia and documented epilepsy among other things). I could give you a laundry list of abuses and negligence in that place. Maybe it’s better now- I hope so. When I got there because I had actually been awake enough to call for help, I was following my MD’s instructions for when to get help (my blood pressure would drop into the 50s systolically- and it wasn’t safe to NOT get help when just lying down wouldn’t do anything). I still was verbally demeaned- for following my doctor’s instructions. It’s so important for those in the ER to know that just because THEY aren’t familiar with a diagnosis doesn’t mean that it’s automatically some psych disorder, and they don’t know everything about the person, just because they have some vague medical info on them. I never asked for pain meds, never had a squadron of unruly family around (never had ANYONE around), never even asked for help to the bathroom- which was partly because the call-light was nowhere to be seen, etc. I was told I was a “wasted bed”, and that “seizure patients never follow up”; (I actually had monthly appointments with my doctor at that time because things were so unstable). It got so bad that I learned to put in my own small gauge NG tube and put in 1/2 strength Gatorade by gravity, to increase my fluids- and take my chances at home. My doc wasn’t thrilled with that (but I know how to manage an NG safely)- yet she knew what had gone on in the ER from what another doc had told her (he was one of the few nice docs). It’s amazing what medical equipment was available on eBay back then.

On April 1, 2007, I was brought in (BP dropped again), and by the time I got there, with the jostling around, it was better, but I still didn’t feel right… I had had a few weeks of weird symptoms that weren’t quite my ‘normal’ weird. The doc on that night actually refused to examine me. He wouldn’t repeat the BP (meant pushing a button- and he didn’t even have to do that; a nurse was near the monitor). I continued to have odd symptoms after being sent home, and eventually had substernal chest pain radiating into my neck. On April 11, I called my doc’s office and was told to go to a different hospital, and tell them about the chest pain; THEY would take care of me. Tests showed that I had multiplechronic, sub-acute, and acute PEs in all three lobes of my right lung and R PA (pulmonary artery). I spent 17 days in the hospital getting regulated on warfarin. The chest pain was from my lung pushing into the apex of my heart. That ER doc’s personal ASSUMPTIONS at St. Xxxx’s could have cost me my life. As it turned out, it was ‘just’ another blow to my feelings as a sub-human. I didn’t have the typical PE symptoms until the 11th (actually the night before- but I wanted to talk to my doc about what to do since going to St. Xxxx’s ER was just a set-up to be blown off and humiliated). And the doc didn’t bother to see WHY I’d been there “too much” (his words) in the prior couple of weeks.

Being considered a psych case, I was sent home unable to walk one time- crawled into the cab, then crawled to my front door. Another time, I was put in a wheelchair van, and sent home- if I needed a wheelchair to go home, how was I supposed to manage at home. Alone. ? One doc began to intubate me without checking to see if I was even awake (I was- I’d just regained consciousness, and saw him walk in the room- alone, no help for suctioning, no meds for a genuine intubation, no indication of what he was going to do)…. he knicked a tonsil going in, cutting it, and setting off my gag reflex- so then I was vomiting blood. A nurse came in, and he eventually pulled the laryngoscope out. He asked me if I’d OD’d (a common assumption- though no drug tests were ever positive), and I said no. He told me that’s all I had to say… he never asked me anything! I didn’t know what he was going to do (he was behind my head- my eyes back there don’t work well). Then left the room. I was so embarrassed to have vomited- but I guess they call it a gag reflex for a reason. That nurse was very kind as she helped me get cleaned up… she must have been new.

A nurse put a Foley in one time (I’d lost consciousness at a neighbor’s home, and she’d called 911… I’d had no presyncopal feeling -which I generally did- just awake one minute, and about 3 hours later waking up in the ER). The nurse blew up the catheter balloon up ON my internal sphincter. I said it hurt, and was trying to tell her it hurt WAY more than it should- and she turned around and walked out of the room. She just left. Absolutely no acknowledgment of what I was saying, yet she was looking at me; she heard me, and saw me trying to move the catheter. I managed to push it in far enough to actually be in my bladder. It took 4 liters of fluid to get my systolic BP to hit 80…. I was sent to ICU, and just managed to avoid dopamine (which could have been a disaster for someone with dysautonomia). I was admitted as an OD– yet NO drug screens EVER showed any type of drugs. Really? Even with evidence, I was still some loathed OD patient? My doc came to see me the next morning, and told me she’d see if she could enter a note to negate the OD diagnosis.

These are a few things that I will probably never forget… and the ER at St. Xxxx’s still scares me. I sent a few letters to the customer service person (whatever they’re called) at the time, and got the canned letter of ‘we strive for excellence in patient care’, blah, blah, blah. Nothing ever changed, because I was seen as a nut job. NO psych history, no drug abuse, no ODs, nothing psych related at all. Just judgmental nurses and docs who saw me too often for their liking. I (me, myself- no doctor) eventually figured out a medication interaction that was contributing to some of the BP issues (the dysautonomia won’t ever go away- but it helps to not have interactions messing with it). I also started going to another ER if I had stuff going on that required an ER (after the PEs, there were some other incidents of chest discomfort/SOB, as well as hematuria one time, requiring some IM vitamin K, and an overnight stay for a couple of tests and IV antibiotics for a UTI). I’m lucky I went there when I was having symptoms that were eventually diagnosed as AML- subtype M3 (APL). I was there for 6 weeks in isolation, induction chemo, and started 19 months of daily chemo of some type (except for ‘scheduled breaks’ and when I had shingles on my butt). I don’t have confidence that St. Xxxx ER docs would have bothered to check things out. And, I could have ended up like Jeannie Hayes- the WREX anchor who died 2 days after officially being diagnosed, after a brain bleed.

As an RN, I know that some patients are annoying, but that doesn’t mean that there isn’t some genuine medical issue going on as well. I did my best to not bother the ER staff. I did anything they asked of me while I was there. Most of the time, I didn’t make the call to be sent there, and when I did, it was because of my personal doc’s parameters. Nobody deserves to be treated like they’re a crazy HUMAN being, and waste of time. I think some of it is the age of many of the newer nurses, and the overall mentality that ‘work’ is a destination, not a verb. I don’t remember a single nasty tech, lab person, etc… it was always the docs and nurses…. very sad. And even if I HAD been someone with some psychiatric issues, does that mean that subhuman care is justified? People ask why those who do have mental health issues don’t get help… I can guess part of the reason. The humiliation isn’t worth it.

Anyway, I’m sure this is more than you wanted to hear. I don’t do Press-Ganey, since they don’t address issues I’ve had. They run a popularity contest, and I’m not interested in those.

Have an enjoyable week, and maybe remind the ER staff that they know nothing of the patients’ entire lives… they see a snapshot of a bad time. And regardless, they still don’t deserve to be belittled, or even physically injured because of their prejudice and assumptions.—- (end of ‘note’)

ER staff gets very little information about a patient’s entire life- or even enough to make a true assessment (or judgement) about the person. They see symptoms and test results, and whether or not they like the ‘diagnosis’ of patient who is before them. It’s unprofessional and abusive to not treat someone with compassion. If it was their family member being talked to in the same manner, they’d be outraged- yet they feel it’s OK to do it to strangers.I realize that there are some amazing, compassionate emergency rooms out there, with incredibly kind and patient staff nurses and doctors. I commend them. They have to deal with whatever walks in the door- and that has to be difficult.

IF it becomes so easy to judge an entire person on a diagnosis (and be less than humane), it’s time to find a new job, or another area of medicine to work in… maybe the morgue. 😉

OK. October is Dysautonomia Awareness Month… With Breast Cancer Awareness Month at the same time, nobody will care about dysautonomia. Men are more than likely behind the sanctity of boobs, so along with being a rare disorder that people really are NOT aware of, there is the whole ta ta thing that people go all pink for, and dysautonomia remains a mystery to most, if they ever hear about it at all. Don’t get me wrong, I’m not ‘against’ cancer awareness, but who on the planet with a pulse and working brainstem isn’t aware of breast cancer? I’ve known and do know many women with breast cancer (including my mom, who died in 2003 after surviving multiple cancer sites for 17 years, dying from something unrelated). I understand that any cancer diagnosis is a nightmare (I’ve been there, with leukemia). (And why is there no blue ribbon with balls on it for testicular cancer awareness? Ladies? ). Anyway, dysautonomia is something that I’ve lived with for decades- probably longer than it was diagnosed. It didn’t flatten me until 2004. And most doctors are clueless. The general population can’t even pronounce it. Dis-auto-gnome-ee-ah.

Every morning, I wake up not knowing if I’ll be able to actually get out of bed and begin my day without my head spinning as my blood pressure tanks. Will my peripheral vision begin to narrow, and will my hearing get muffled? Or will I actually be able to get up and not have to lie down again? When I get in the shower, will I get that ‘sweet spot’ in the temperature of the water where I get a nice hot shower, or will it be too hot, and once again start the process of passing out? My heat intolerance isn’t about temperature preference or comfort, it’s about staying conscious. My thermostat must stay around or below 64 degrees, or I start to have symptoms. Fifty degrees is much better if I’m outside. I wear a light snap-front sweatshirt, left open, when it’s in the 40s. If I leave home to go into another building where I have no control over the thermostat, I have to wear 5 pounds of cooling vest inserts. To stay conscious. I’ll start to ‘burn up’ for no good reason (and this is NOT hot flashes- I’ve had those, and they are totally different). Or I’ll get so tired, that doing anything is overwhelming.

I ‘look OK’… aside from being overweight, and having very few eyebrows post chemo (which at this point has to be permanent), I look fine. That’s all well and good- but it can also be very frustrating when trying to explain why I can’t do something. I also have multiple ‘other’ medical and orthopedic problems (discs, knees, spine, epilepsy, diabetes, yadda, yadda, yadda…), so when I’m walking I look a bit gimpy, but the dysautonomia is totally invisible if I’m not lit up like a red stop light from severe flushing when the dysautonomia spells kick in. My thigh muscles have atrophied (probably from diabetes and chemo), which looks weird, and makes walking quite tiresome. But people really don’t ‘get’ the whole dysautonomia thing.

The autonomic nervous system controls involuntary body functions- blood pressure, heart rate, breathing, flushing, muscle/brain signals, etc. There are many ways this can all go wrong. Initially, I had problems with passing out, as well as my right pupil dilating. Then my gait would get wonky, and eventually I’d keel over and sleep hard for hours. Temperature dysregulation hadn’t shown up yet. I was in Texas when this all started, and I did fairly well at first. When it was first a ‘thing’, I was living in a house (with no central AC- just room units for at night) with a coworker to share expenses (perfect situation; we had opposite schedules, so it was basically like living alone). My housemate would hear me hit the floor from her room at the other end of the house, and find me passed out on the wood floor. I thought I was just ‘nervous’ after a recent hospitalization for eating disorders, but she said that there was nothing ‘nervous’ about me that she’d seen, and she really thought I had some type of medical issue. One night I couldn’t get up off the floor like usual, and I agreed that she could call 911. That started the whole testing process.

I was lucky that I had a neurologist who thought I had dysautonomia. She sent me to see an electrophysiologist (EKG specialist) in San Antonio, who ended up doing a tilt table test. My blood pressure dropped to 44/16, and heart rate dropped into the 50s (heart rate should go up, and compensate for a low BP, though a BP that low isn’t usually associated with ‘coming back’). I was put on the first of several meds, and sent home (driving myself 60 miles after nearly passing out).

I continued to have issues with work, but eventually meds were sorted out, and I was doing well enough to get my work done. Additional disorders were ruled out (MS, myasthenia gravis, pheochromocytoma, brain tumor, stroke, etc). The nursing home I went to work at had some very accommodating supervisors, which made a huge difference in not being panicky when I felt something coming on (the prior place did a lot of ‘threatening’, and since I was the only RN on campus at a drug/alcohol detox center on weekends, I understood the need for a conscious employee :p – but I didn’t want to stop working; being a nurse is who I AM). I had a mattress overlay in my office at the nursing home, to put on the floor if I needed to lie down. I also had a fan from home, as temperature had begun to be something I had to keep ‘moderate’. If an episode hit, I lied down; when it was over, I finished my work.

Fast forward, and I’m back in Illinois in my hometown, trying to keep things together at work, and it just started falling more and more apart. I was hauled out by ambulance 10-12 times in a month or so at another nursing home (office job), and it was clear that I wasn’t able to keep working. I’d left a pediatric hospital job since I was terrified I’d get dizzy/lightheaded when handling very tiny babies (or larger, heavy ones), and that just wasn’t something I was willing to risk (along with some other issues with the job itself). I had to deal with a new neurologist on my insurance plan at the hospital, who seemed clueless. Once on disability (and Medicare two years after that), I found a neurologist who did know about dysautonomia, as well as a internal medicine doc who was quite familiar with the disorder. With multiple medications (roughly 25 pills/day on a good day; more if not- and 3-4 shots of insulin) and total control over my thermostat, I’m able to sit up for several hours, but I have to get up every few minutes to avoid any ‘pooling’ of blood in my legs, or I’ll enter the ‘pre-syncope zone’ when I stand up.

Now, my ‘normal’ consists of having the air conditioner on when it’s 30 degrees Fahrenheit outside. When there is snow piled up outside, my AC unit is the only one with space around it where the snow has melted from the heat generated by the AC. I leave home about 2-3 times a month– monthly grocery shopping, a doctor’s appointment here and there, and maybe a short trip to the grocery store about half-way between disability checks, for milk and/or bread. Everything has to be ‘paced’. If I do laundry, I can’t unload the dishwasher. If I take trash to the dumpster, I can’t vacuum in the same day. And I struggle to maintain any muscle tone, to avoid getting worse… but the chemo I had to have to survive the leukemia has caused deterioration. I guess there are tradeoffs with everything. Nothing is taken for granted.

Being on Medicare has been a horrific eye-opener. I used to do the assessments that determined reimbursement for Medicare patients at the nursing home I worked at in Texas. I was superficially familiar with Medicare. Then I was on it. Medicare is expensive. There is the part B (doctors’ office and equipment/supply part) monthly premium (about $110). There is the supplement plan since Medicare doesn’t cover huge portions of hospitalizations and tests (so add another $325 per month). The part D (prescription plan) is about $75 per month, and between over the counter medications I MUST have, as well as paying out of pocket for insulin, that adds about $125/month (I’ll get into insulin in another post). SO if all goes well, $635/month goes out the door for medical expenses. That pretty much ensures no out of pocket expenses for doctor’s office visits, tests, and (knock on wood) hospital costs. When I was in for 6 weeks for leukemia in 2010, the bill was $300K…. nearly 1/3 of a million dollars. I will make my last payment on what they didn’t write off this month. Four and a half years later. That’s not included in the $635.

Dysautonomia can be mild or fatal. With the chemo causing deterioration, and knowing what I was like beforehand, I don’t think I have the fatal type (Johnny Cash did). I have the invisible, life-altering, disabling, survivable kind. Some symptoms may be worse than others on different days. I can have one cheek very hot, and flushed to almost a blue-red, while the other is cool and has normal coloring. I can have blue fingernails, not from lack of oxygen, but because of constricted blood flow. My heart rate has dropped into the 30’s for no good reason (that bought me 5 days on a cardiac floor with nurses who were very nervous about the epilepsy- padding the side rails and putting a bed alarm on my mattress that went off if I got up to go to the bathroom- and GADS, they panicked when I got up to walk in the halls for some type of activity one night…. how did they think I lived at home? Alarmed, padded bed?). Sometimes one arm is flushed and hot, and the other cool and pale. I’ve looked ‘dead’ per one former supervisor, with breathing so shallow and extreme paleness, it scared her many times. I live alone, so have had to learn what sets me off… sometimes it’s as simple as a ‘scare’ on a TV show that wasn’t expected. But heat and pain are my main triggers. I’m in constant, chronic pain- that’s harder to control than the temperature.

Some people have POTS (postural orthostatic tachycardic syndrome), which causes symptoms if someone is standing. At all. Their heart rate goes out of control simply by being vertical. Lots of folks with that need wheelchairs for safety. There is neurocardiogenic syncope- which is actually a simple faint, until it’s a pattern. There is pure autonomic failure – where nothing works right most of the time. Shy-Drager syndrome is one of those total failure syndromes, and even saliva production is involved. Dysautonomia isn’t one thing. It’s a combination of symptoms that are generated by an abnormality of the autonomic nervous system. Some are relatively minor, and others require feeding tubes, and other external measures to make it survivable. More people have dysautonomia than are diagnosed, per research estimates. It can affect any age group or gender, though females tend to be diagnosed more often. It can be seen as a conversion disorder or other emotionally based problem, which causes improper diagnoses, and completely inappropriate medications. I encourage anyone who finds their symptoms listed in the informational links to talk to their doctor. There isn’t a cure, but it’s generally not fatal, and can be treated. Getting used to the new normal is the hardest part, as is not being understood.

Boy howdy, did I have a good time today. Should probably be illegal, and yet it’s required by the conscientious medical provider I have, to the point of getting actual mail, not only e-mail reminders. I think the last time I got real mail from my doc, it was an order referring me to an oncologist because my entire blood count was next to nothing, beginning the odyssey of leukemia survival. So, they scare the crap out of me to let me know it was time for the annual (or so they’d prefer) boob compressing. It’s an exam undoubtedly devised by a man who never thought that there could come a time when a very ornery, hormonal, fed-up menopausal woman somewhere in the medical invention universe would come up with a testicle crushing machine to ID nut cancer. If my personal physician wasn’t female, I’d probably find some internet conspiracy theories to make myself feel better about blowing off said mammogram. But she is, so I went.

The first time I had a mammogram was about eight or nine years ago. I’d heard horrible things about the girls being smashed so flat, they needed spatulas to scrape them off of the table thingie when the exam was over. It had been compared to the labor pains of the woman’s northern hemisphere. I went in terrified of having my boobs stretched and pressed so harshly that I’d need to roll them up in those old pink foam rollers to get them to stay in my bra afterwards. But I went. I followed all instructions to a tee, including the ‘no deodorant’ rule. My first thought was that the technician would be wearing a gas mask, but not the case. And the exam began…

Eh. Not a big deal. Yeah, so I wouldn’t want to be holed up in those positions for any longer, but it wasn’t horrific. I’d survived, and the girls weren’t bruised or misshapen. Still faced different directions. Back to baseline. There was, however, a problem. I tend to be somewhat intolerant of nonporous surfaces, and I sweat when in contact with them. I’m also very heat intolerant, so I sweat just thinking about being slightly warmish. My boobs also inherited this condition. The first one let go of the table without much fanfare. Peeled ‘er off, and tucked ‘er back in the backwards ugly-gown. The second one? Nope. Did. Not. Want. To. Go. Home. She was flattened down, and gripping with a suction I didn’t know was possible from a boob. She put some octopi to shame that day. I had horrific images flashing in my head about finally getting her loose, only to have the recoil slap up against my forehead, refusing to move. I’d have to drive home with a boob over my left eye, hoping like crazy that I didn’t get pulled over for ANY reason. The sweat would be creating humidity in the car that would make driving hazardous. Ferns would grow. Finally, I got it loose, and hunched over as I ran into the dressing room, hoping I’d been able to dislodge it without the tech getting any glimpse of the power struggle going on from a stubborn ‘limp’ tit on her table. I wasn’t letting that boob get any ‘lift’ from air as I moved, lest she go airborne, and become too unruly to shove back into my bra. Scary having something seemingly operating independently of the rest of me 😮

I had another one the winter after I finished chemo for leukemia (APL). Once I got the OK, I had every crevice and loose bit of tissue tested for any and all types of weirdness. I wanted to know I was starting with a clean slate. And so I did- and all came out OK.

Then, came today. I had a routine oncology appointment today (is that an oxymoron? ‘Routine’ and ‘oncology’ lumped together?) , so I scheduled the mammogram for after that. That meant no deodorant for the oncology appointment (but I did mist the back of my shirt with a bit of body spray). Menopause has done some odd things with body odors. I hadn’t anticipated that when it all started, but have come to understand that I smell really, really bad if I’m not layered up with whatever non-toxic odor neutralizers I can find. I’ve been tempted to stuff dryer sheets in my bra. As it is, when I get a whiff of my pits- which are connected to a sedentary body, creating no extra odor due to healthy activity- I dash off (well, I limp, so ‘dashing’ probably isn’t accurate) to do a wipe down with witch hazel, as well as a moderate scrub with some old cheap washcloths with some texture to them. A layer of non-toxic baby powder is also a good thing. This is all when I’m at home, alone, with nobody to witness the tragedy of menopausal pits.

Anyway, I got through the oncology appointment and went to the mammogram appointment, and got in early, since it seems Tuesdays in Cancerville are fairly sedate, and I overestimated the time between appointments. But, the boob squishing department was at a lull, and I got right in over there. Did I mention that the handicapped parking is down about 16 steps? Anyway, I was escorted to the changing room, given the ugly-gown to change into, and then made my way to the exam room, where the tech had some questions. Thus far, the pit stench wasn’t horrible. Not my finest, but I didn’t think I’d kill anyone. On to the exam.

As soon as my right (the first one done) arm was raised, the green mist appeared. I was suddenly reminded of roadkill along the backroads of Texas in July, about two days after impact. Buzzards were circling, and flies could be seen in cloud form. I smelled like decomposition 😮 Oy. Those poor techs. Menopause was making me smell like a dead opossum. Or skunk. With a witness. I was horrified. I laughed it off, and the tech just said she didn’t smell anything. That must be part of the job application- must pass one of two of the following: outstanding liar or absolutely no sense of smell. The woman today seemed trustworthy enough, so my guess is that the part of her brain that interprets smell was blown out at close range in a terrible crossbow accident that left her otherwise unharmed.

I got out of there, and made it home so I could get the Brillo pads out after my pits. I got my appointment clothes off (still emitting a slight green fog), and got my natural deodorant. I thought about applying it with a spackling knife, but decided that might be a little too looney. I’m not the queen of persnickety hygiene, but I try not to be a community health hazard. At home, it’s just me and the dog most of the time (and she seems quite happy, no matter how much I’m mortified by the changes of menopause). I like it that way, with few exceptions. I just hope that when this whole process of ovarian retirement is over, I go back to being just a little whiffy when it’s hot out. NOT being so toxic that I need to wear hazmat signs when I leave home.

For many years, I’ve wondered what it was going to be like to have the heat intolerance of dysautonomia, and the hot flashes of menopause. Well, now I know.It’s like nothing else. If you’ve ever been too close to a bonfire, and felt like you were going to spontaneously combust, that’s close… but the fire is inside of you. You can’t move away from it. It takes away the ability to focus on anything else. It is all-consuming. And, thankfully, it only lasts for 15-30 seconds, hence the ‘flash’ label. By the time I get to the thermostat to set it on ‘freezer burn’, it’s over. Then it’s back to the ‘normal’ heat intolerance of dysautonomia. I’ve had the AC on since January (in the middle of one of the coldest and snowiest winters we’ve ever had). Now it’s summer, and the hot flashes are part of daily life.

Some other little treats I hadn’t expected with peri-menopause are nausea (literally like morning sickness, with no particular pattern), memory lapses (that go along with some leftover chemo-brain, and make me wonder if I’m becoming demented, but then remember that people who really are demented don’t wonder about it much), and changes in body odor. Make that a stench that one expects amongst cross-country runners in the Sahara that have never had the luxury of showers or antiperspirant. It’s awful. Like I can smell myself, and it’s a combo of nasty pits, a landfill, and chunky, sour milk all wrapped into one. Hormones, the articles say. It’s all about shifting hormones.

I’d noticed some odd chin hairs for a while, and have a pretty good system for plucking… magnifying mirror, flashlight, reading glasses, and primo tweezers. Not a problem. Or so I thought. After the family Christmas party last year, I found one that was about an inch long (did I mention the vision changes that start pretty much on the 40th birthday? I turned 50 last November, so my close-up vision is toast). I wonder how many family members saw it, and wondered if I was going ‘continental’. I figured that was a hormonal thing. But the nausea caught me off guard. Fortunately, it does get better with some saltines and nausea meds. The memory stuff is annoying, but I really don’t have to remember a lot, and the stuff I do have to remember, I write down. The stink is manageable, but still annoying. But the hot flashes? They are “special”. While I know in my head that it’s gonna be over soon, it’s intense for those few seconds. I keep wondering if I’m gonna leave charred areas on my recliner.

The dog seems to know when the hot flashes are going on, and she wants to get up on my lap with her hot furry self, and lie down on me. 😦 She’s been quickly pushed off of me a few times, giving me a look of disgust. I just want any exposed skin to have full advantage of the air conditioner when the flashes hit. She can come back when it’s over.

The hot flashes happen several times a day, but not often enough to get any soy pills marketed for peri-menopausal women (I worry about side effects and interactions with my mandatory medications). I keep telling myself that there’s a tradeoff for not having to ride the cotton pony every month. I’ve been lulled into a false sense of “No Aunt Flo”, only to see her again three months since the last visit. NO real warning, besides a day of boob aches, and then BOOM. She’s back. I’ll be glad when it’s all done, but have heard that sometimes the symptoms of menopause can be gone for years, and come back when someone is in their 70s and 80s. Seriously? I might be 75 years old, and be wracked with a fogging stench and waves of blistering heat, whilst my friends are in their rockers, with an extra lap robe and sweater on, and long-gone senses of smell? I’ll be the odd duck, I’m pretty sure of that. No point in thinking that I’ll turn ‘normal’ as time goes on…. that hasn’t panned out so far. If anything, the dysautonomia is getting consistently worse (starting with the chemo). Oh, bother.

Well, the wonder of those hot flashes is over. I’m pretty sure they’d be awful with or without dysautonomia. Seems like most women have them, with or without night sweats (knock on laminate, I don’t have those). I don’t remember how long this is supposed to last… and in some ways, I guess it’s good that it’s started, so it can get on and be done with. Until then, my thermostat is shifted more often than undies full of fire ants. And with as much urgency.

Before dysautonomia, I loved grocery shopping. I’d go to several places for various things, and just truly enjoyed picking out fresh produce, making new things, and trying something different each time I shopped. Now, I am thankful to get out upright and lucid, and home on my own power.

I’ve learned that it’s much better for me to shop in the middle of the night when others who are huffy about me being rather slow are home with their noisy kids. It’s also cooler, and while I wear my ice vest year round (in the winter people have the audacity to have their heat on), it’s the only truly safe time to go (well, as safe as it gets). If I try to go when it’s 90 degrees outside (and humid, like we have in Northern Illinois, and most of the Midwest during the summer), it would be incredibly foolish. I can manage a quick ‘refill’ trip for milk, ice, and things like that…. but for my main shopping, it’s a middle of the night affair. Handicapped parking also helps (and keeps me as independent as possible). And, I remembered to take my cell phone tonight !

I just went shopping a few hours ago. This time was rather noteworthy as I’m just now back on the extended release form of propranolol (beta blocker that works for me). The idiots that decide the formulary for the Medicare part D prescription plan (which I pay for– and get the highest coverage possible) opted to cut out the extended release versions of generic meds. GENERICS ! That stuff that was free (for the past 4 years) if ordered through the preferred mail order pharmacy every 3 months is now $75 per month. Each. In addition to the other stuff I have to pay out of pocket for, now there’s this. And the premium – I’m paying for the privilege of not having good coverage. I spent a LOT of time comparing Part D plans…. they all chopped the extended release of many meds (my main seizure med was cut back to the regular release unless I fork over another $75/month for that; that regular release works OK for me)- as well as muscle relaxants, nausea meds, clonazepam (even though it’s used for the dysautonomia, and adjunct to seizures- which is its original classification as an anticonvulsant- it’s a benzodiazepine, which are considered bad news for the usual Medicare population, so it’s not covered…. can’t depend on a doctor to know what his/her patient needs), and the inaccessible forms of insulin that would be huge problems with the ‘donut hole’ where coverage stops until another level of out of pocket costs is met. So I get the stuff that has been around since T. Rexes roamed the earth (but thanks to Walmart, I have an option that I can get if I fiddle with my budget for other things- can’t NOT have insulin). Sigh. Grumble. Arggghhhh. 😦 I worked 20+ years to give good care as an RN… and now, I’m getting bottom of the barrel stuff. But, at least I’m not eating cat food like some people resort to. 😮

I had to try the regular release propranolol, since $75 is HUGE to add into mandatory expenses. And, it was a big failure. Since the chemo for the leukemia back in 2010-2011 (19 months), the autonomic stuff has gotten considerably worse (not uncommon with chemo with people who do NOT have autonomic problems ). It’s now making my thigh muscles shrink (adios strength that was pretty iffy to start with) along with the blood pressure, heart rate, fatigue, heat intolerance, etc., especially in the evening. I was already taking an extra 20mg many evenings, when the facial flushing and tachycardia started, as I just watched TV- no trigger or physical stressors. The regular release stuff had me sleeping up to 20 hours a day- waking up just long enough to take more meds, get something to drink, check my blood sugar, pee, and go back to bed. That wasn’t going to work, so I had to fork over the $75, and add it to my monthly expenses list. That means I pay about $700 per month for Medicare premiums, a Medicare supplement, out of pocket drugs (insulin, syringes- to keep me out of the ‘donut hole’ where there is no coverage), over the counter drugs, Part D premium, dental premium, etc. My rent isn’t much more. That’s nuts. BUT, I’m back on the ‘good’ propranolol (Inderal). The good news is that I get enough meds to get free delivery for the out-of-pocket-cost meds. ! One less trip to the pharmacy. That’s always a good thing. Oh, did I mention that I’m now in perimenopause and have hot flashes? They are definitely not the same as the normal heat intolerance. For about 15-30 seconds, I feel like I have a bonfire inside of me. Not good.

I made it through getting this month’s groceries, at the less convenient, but more options, grocery store. I do have a friend who will pick up bottled water for me (city water here is like putting a straw in a swimming pool, there’s so much chlorine- and I actually have stalactites growing from my faucet, the water is that hard… I chip them off periodically; and my fridge isn’t big enough for a filter pitcher, and fresh food). She’s great about dragging water over- but she also has a life, job, husband, and young kid. My dad will help – but his idea of shopping is getting enough for 3 days. I can’t function like that. I have to get what I need, and be done with it. I’m the one who deals with %95+ of my shopping… and unloading it from the car, putting it away, hating that I hurt for a day or two afterwards. Fibromyalgia, degenerative disc disease, and arthritis don’t like shopping at all.

I do make use of Amazon and Schwan’s. I think most folks know about Amazon, and they’ve started Amazon Prime Pantry. It will require a $100/year fee, but I can get grocery store items in single units, at grocery store prices (decent ones), and as much as can fit in a box that is rated for 45 pounds will cost 6.99 per shipment of the whole box. Plus there are perks with the regular Prime for non-grocery items. That is a good thing. And there’s Schwan’s, that has frozen food that is actually good (the ice cream cones are addicting… I have to have very good blood sugars before I can indulge in one of those ) . Many items are basically heat-and-eat. Minimal prep (you can get raw proteins, but I rarely do). The turkey and mashed potatoes, and sliced beef and mashed potatoes are really good…. they have great fruit and veggies, and also decent breads (I don’t use a lot of bread, so the smaller loaves or baguettes are great). That has helped a lot. My dad got me a 7 cu ft freezer for Christmas for my ice vest inserts and ‘back-up’ inserts- and it’s been way roomier than I expected, so I have room for a month’s worth of stuff, easily- and some bags of ice. It helps SO much to have stuff dropped off at the front door. That is a huge help. The dollar entrees (Michelina is the brand I get- both the lean and regular versions) are pretty good, great on the budget, and three minutes in the microwave equals a decent small meal (which I prefer).

So, now I’m home, showered, and getting ready to go to bed. I had some nasty calf cramping when I got home, so took some magnesium and potassium along with a pain pill, and am seeing if that’s going to be enough before I go to bed, to not wake up having to step on my foot to get it to flatten, as it’s spasmed so hard into a ‘toe point’. Also drinking some tonic water with powdered lime (True Lime)…. tastes great- and the quinine might help the cramping. The fluids won’t hurt either.

It used to be so easy. I’d lug stuff up to a third floor apartment at times (lived there for about 3 years- and only had 1 1/2 flights of stairs how the building was set up). Thought nothing of it. I was younger, and it was many years before the big D was diagnosed. I never wondered if the ice vest was going to ‘hold’ (it actually draws heat away from me; I’m looking into some inserts that are actual ice packs for really warm situations). I didn’t know cooling vests existed…. or that people had need of them. I didn’t wonder if I’d pass out, or be on the road home and have to pull over until a pre-syncopal episode passed. Fortunately, I do have enough warning, and know what symptoms lead to what, for me.

I’m thankful I can still do what I do. This will be the only time I’m away from home except for MD appointments this month. There are no social outings. I do want to go to a conservatory here that has amazing plants and flowers (camera op !!), but figure it will be heated- and that will require the ice vest, and rolling walker with the insulated bag for the back-up inserts. I will have to wait until the fall now, for that to work.

I still think about doing things, and do what I can to stay busy at home (the reborn doll painting is helping…. here’s some examples of a doll I’ve done and sold- they start as blank vinyl…no color. It’s my biggest activity now, on days when I can tolerate being in the chair. I end up in pain, but I do love making something that (so far) three people have liked enough to buy 🙂 Totally off topic from shopping, but it helps the bummer days when I can do something creative- even if only 15 minutes at a time. 🙂 OK. I’m rambling. Time to go to bed (it’s 7:30 a.m.).